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Electronic letters published:
![[Read Comment]](/icons/misc/sectionDOWN.gif){kind=icon}
The need for patient advocacy
Where was Hospice?
Rights and Exercising Rights
Whom are we treating?
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JOSEPH B. STRATON, Philadelphia, PA, USA Assistant Professor, University of Pennsylvania
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Dr. Allen closes his reflection with the observation: “[Henry] reminds me that a doctor who cares is the greatest success in modern medicine.”1 As I read the article, though, I am struck that a doctor who cared was not enough to provide this patient with the assistance he needed. The description of Henry’s final weeks of life points out that we have created a medical system in which patients require an advocate who will assist them in making informed decisions about the medical care they receive and who will carry out those decisions. Several statements in the article stick with me as exemplifying the powerlessness experienced by many patients. Statements such as “[Henry] had no choice but to be subjected to the ways of contemporary hospitalization” and “It was out of my hands, and Henry’s, as the son was convinced by one doctor after another….”1 People are easily overwhelmed by the complexity and rapidity of medical decision-making required of them when acutely ill. Patients, especially patients suffering from advanced illness, need the assistance of an informed medical professional who will interpret the medical information and will provide a full explanation of the options available. Without this type of patient advocacy, patients like Henry and many others are ill-equipped to make informed decisions. Powerlessness is a dominant theme in the article. When reading the article, one feels the strong sense regret Dr. Allen experienced as his patient appears to have been put through procedures that likely would have been refused had the patient been fully informed and capable of articulating his wishes. Also, one is struck by the feeling of powerlessness Dr. Allen himself experienced in his role as a second-year resident who would like to advocate for his patient but feels compelled to give in to the hierarchical dominance of his attending and the consultants. Thus, rather than a reminder of the need for caring doctors, I find the article reminds me of vital role we as family physicians need to play as patient advocates for the many vulnerable people who entrust us with their medical care. We must be diligent to ensure that our patients understand the risks and benefits of their treatment so that they are able to provide truly informed consent. We must educate our patients about advanced directives and document their wishes so that we can advocate for medical decisions even when they are unable speak for themselves. 1Allen RE. Boy Scouts for Henry. Ann Fam Med 2006; 4 (1): 79-80. Competing interests: None declared |
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Samuel W. Warburton, MD, Durham, NC, USA Family Physician, Clinical Professor, Duke University Medical CenterWhere
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"Boy Scouts for Henry" is a sad commentary that despite technical advances in medicine we still dont seem to understand our role as healers and helpers at the end of life. The teaching establishment remains focused on CT scans, bronchoscopy, etc rather than what is necessary to help Mr. Kormos. But to help Mr. Kormos, we must know more about him. And there is very little information about his life, his family, his wishes , his fears. Did anyone take the time to sit at the bedside and listen to the patient? Time is precious in the life of a busy 2nd year resident. But giving this gentleman the gift of time may be more important than ordering the next CT scan. And where is hospice in this picture? Apparently hospice care was forgotten during the technical challenges of "putting a finger or tube in every orifice". One must wonder where the attending in charge of this case was. Is this the sort of care that attending would like for his or her father? I doubt it. And why was hospice not part of the nursing home picture. It can be and should be. Mr. Kormos clearly needed an ombudsman or patient advocate. The son was the natural person for that role. However, it is not easy to tell the medical team, "No, I don't want that for my father..." Did the hospital have a patient advocate? Mr Kormos is a tale of the tragedy, not the triumph of modern medicine. We must train future physicians in care at the end of life, including recognizing when the end is near. It was not hard to recognize in Mr. Kormos that the end was near. But little was done to make the end easier. Shame on the doctors, shame on the profession. Competing interests: None declared |
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Martin L. Gunderson, St. Paul, MN Professor of Philosophy
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In "Boy Scouts for Henry" Dr. Allen concludes his reflections on the terminally ill by stating, “To assist their death is criminal, but to prolong a life with no quality may be equally wrong.” It is important to make two distinctions here. First, we need to distinguish legal and moral issues. Whether it is criminal in a legal sense to assist death depends on how it is done and the laws of the relevant state or nation. Oregon’s Death with Dignity Act, for example, allows a physician under certain circumstances to prescribe lethal medication, though not to administer it. I will not address the issue of whether it is a moral crime because actively assisting death is not at issue in the case of Mr. Kormos, though I have argued elsewhere that in some cases physician-assisted death is justified. Second, we need to distinguish questions of rights from questions of how those rights ought to be exercised. Competent patient’s have a right to refuse treatment—even life-saving treatment. This is both a legal and a moral right. Dr. Allen’s presentation of the case makes it poignantly clear to what extent Mr. Kormos’s values were violated and his decisions undermined by not respecting this right. But, having a right to refuse treatment is not the same as having good reason to refuse treatment. How should Mr. Kormos have exercised his right if given a chance? It seems to me that, with treatment, Mr. Kormos had a good chance at a quality of life that is worth living if only for a few months. With treatment Mr. Kormos could continue as a morally competent person and continue his relationship with his son. If Immanuel Kant is right, as I believe he is, persons have dignity (worth beyond price) in virtue of their moral agency. Mr. Kormos was a person with dignity, and there was powerful reason for him not refuse treatment and thereby sacrificed that which has worth beyond price in order to avoid the medical interventions he detested. It is his decision, however. It would be reasonable for the physician to encourage Mr. Kormos to accept treatment and to help him make competent decisions. It would not, however, be reasonable to force such treatment on him. To do so would be to violate his moral agency, which is what gives his life dignity in the first place. Competing interests: None declared |
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Anthony J. Costa, M.D., Rootstown, Ohio Chair, Department of Family Medicine, NEOUCOM
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The poignant reflection by Dr. Allen1 clearly shows the difference between treatment and care. His patient received the best modern medicine had to offer, but not what was best for the patient. One must ask the question, “Whom are we treating?” Studies by Wennberg and others have shown that care received by patients in the last six months of life is more related to supply than demand.2 Patients at a university hospital in San Francisco had 27 physician visits during their last six months of life, with 30% of them seeing ten or more physicians and spending an average of 11.1 days in the hospital. Patients cared for during their last six months of life in a university hospital in New York had an average of 76 physician visits, with nearly 60% of them seeing ten physicians or more and spending an average of 27.1 days in the hospital. Other studies have shown that patients who receive a greater amount care do not have better outcomes. 3 It’s no wonder that Dr. Allen’s patient had “a disgust for modern medicine.” We must shift from a mindset of battling disease at all costs to one of doing the right thing for our patients. Dr. Allen reminds us that “sometimes our patients need help and permission to pass on, a peaceful death uninterrupted by diagnostics and rescue procedures.” We need to give each other permission to offer them that alternative. 1. Allen RE. Boy Scouts for Henry. Ann Fam Med 2006; 4 (1): 79-80. 2. Wennberg JE, Fisher ES, Stukel TA, et al. Use of hospitals, physician visits, and hospice care during the last six months of life among cohorts loyal to highly respected hospitals in the United States. BMJ 2004; 328: 607-611. 3. Fisher ES, Wennberg DE, Stukel TA, et al. The implications of regional variations in Medicare spending. Part I: The content, quality, and accessibility of care. Ann Intern Med 2003; 138 (4): 273-287. Competing interests: None declared |
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